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    • #22313
      Amanda
      Keymaster

      Have you ever noticed that Dagmar and I occasionally have different opinions on a topic? Sometimes the difference is nothing more than two ideas that exist without really impacting the other idea. Other times we have opposing ideas, beliefs, or thoughts.
      One of the first “differences” I recall was about ALS Awareness month. I approached the month with the, “Let’s talk about ALS Awareness, ALS, ALS treatments, ALS Advocacy” … basically ALS 24/7. I posted as much information as I could. Then, Dagmar posted a column in which she acknowledged the stress (and how to overcome it) that the abundance of stories and events can have on a pALS. Something I hadn’t considered. (https://alsnewstoday.com/columns/resilience-awareness-message/) Dagmar and I don’t necessarily organize or collaborate on each discussion topic we post, so they often vary on topics. When we have a different opinion on a topic it isn’t a big deal.
      From my experience, we look at things from uniquely different perspectives, which definitely impacts our thoughts and beliefs. As a person in the pre-fALS category, I am always open and want to hear how pALS approach life and challenges. If Dagmar comments on my post, and adds information or presents a different perspective, my first thought is, “Wow, I learned something new.” Or “I didn’t know that.” I take each interaction as an opportunity to learn.
      We are respectful of each other’s opinions and differences. We work closely together to ensure that the forums are adhering to our community standards and that each post adds something to the discussion, or provides new information. We try to discuss the good news, the advances and disappointments in research, workarounds for daily challenges, and the topics and events that are painful for our community.
      We appreciate that our community members take a similar approach when they have opposing ideas. Having respect for each other is vital and each member is an integral part of what makes our forum work!! Some members have subjects they are passionate about or have specialized knowledge about. While others are more inclined to read posts and offer encouragement and support. Still, others are not comfortable posting at all, but keep up with the important topics. All of that is important to your team at ALS News Today.
      Please know that we welcome your thoughts, ideas, and suggestions. Just email me and Dagmar and we will be sure to follow up!

    • #22323
      Richard
      Participant

      …and my opinions must differ from both yours and Dagmar’s opinions because my posts/replies don’t get posted or are deleted, with no explanation of why.

      • #22348
        Amanda
        Keymaster

        Richard,

        Any time a post is deleted or edited, Dagmar and I consult each other and include the other on the response. The member is emailed and we explain why the post or comment was edited or deleted.  In our community standards it is very clear that comments are supposed to contribute to the discussion, and provide information or support. You repeatedly post the same list and you have been asked not to several times. It is not your opinions that get deleted, only the lists that you repeatedly post and there has always been an explanation for any action taken.

        Amanda

    • #22329
      Dagmar Munn
      Keymaster

      Richard, we do support differing opinions. However, I believe several of your recent replies were deleted because you were posting (repeatedly) long lists of links rather than participating in the topic’s discussion. Each time you posted the same list a private message was sent to you outlining the what and why they were deleted.

      Having ongoing and helpful discussions is what makes our forum vibrant.

    • #22335
      Hermilo Alvarez
      Participant

      It’s been a year taking Radicava, and a nurse that comes to my house doesn’t see an improvement. It’s not a cure, we said. Has any one given up this treatment because their nurse doesn’t see an improvement?

      • #22354
        Cheryl Teribury
        Participant

        I’ve been taking IV Radicava for four years, almost since my diagnosis.  My progression has been relatively slow.  I credit Radicava for that.  As I understand it, Radicava will not make your condition improve.  It will slow the progression, hence, allowing you to live a little  longer.

        BTW….I started the new oral formula earlier this month.  It is  so much more convenient.

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